Sooner the better

The government says that early intervention is the cornerstone
of its special educational needs (SEN) strategy. So why is it that
thousands of families are missing out on support that can make a
huge difference to the development of a disabled child?

“Early intervention” means different things to people in
different contexts. With disabled children it means “any activity
designed to promote the learning and development of young disabled
children”.

Early intervention can cover play, therapy, early education etc.
It could be anything from a very short programme to tackle, say, a
sleep problem, to a complex behaviour programme designed to run for
several years. Early intervention also includes physiotherapy,
occupational therapy and speech and language therapy. There are
also several “branded” early interventions such as Portage and
EarlyBird.

There is a growing recognition that for disabled children a
postcode lottery exists for early intervention with many children
and families missing out completely on the very early support that
would make a difference. For too many children early intervention
is not early enough, with crucial months or even years missed. For
other children, precious time and resources are wasted on
interventions that are ineffective.

There are, of course, pockets of excellent practice around the
country, in special schools and specialist centres as well as
mainstream services. However, the evidence base for early
intervention for disabled children is weak. Even when early
interventions have been evaluated these messages from research are
not effectively disseminated. For parents and practitioners it is a
struggle to find out which early interventions work with which
children, and how to be trained to deliver these interventions.

Children with all types of disability benefit from early
intervention. The main issue that needs researching is which
specific interventions would provide maximum benefit to which
children at which age.

The Department for Education and Skills has acknowledged this
need for research in its strategy for SEN, Removing Barriers to
Achievement, which includes a feasibility study to set up a
National Centre for Early Intervention.

The SEN strategy states: “It is vital that early identification
is followed up by efficient early intervention so that parents can
be confident that once problems are identified help will be
forthcoming.”

Mencap is leading this feasibility study which reports to the
DfES in March 2005. Through the study an alliance of parents,
practitioners and charities is being built that want to see much
more focus on early intervention for disabled children in the
UK.

Paul Ennals, head of the National Children’s Bureau says: “Many
disabled children have been missing out for too long on the early
interventions that would improve their life chances.”

The facts

The changing population of disabled children

There are many changes in the population of disabled children that
show the need for focusing on early intervention:

There are about 248,292 children aged five and under who have a
disability – about 6% of the population (Cabinet Office)

The new universal national hearing screening (UNHS) for babies
is predicted to produce a 50% increase in deaf babies identified in
the neonate phase and 60% of these babies will have additional
impairments.

Twenty-five years ago only 20% of babies born after less than
28 weeks’ gestation survived. Today, 80% of those babies
survive.

The UK has the highest rate of low birthweight babies in
Western Europe. The number of low birthweight babies is increasing,
with an 11 per cent rise between 1993 and 2000.

Half of all babies who survive very premature birth grow up
with a disability.

The prevalence of severe disability among children is highest
in those under five years old.

Government targets

The government’s National Service Framework for Children sets
standards for all children’s services for the next 10 years. Early
intervention and early support for parents of disabled children are
central themes in the NSF.

Core standards include:

Supporting parents and carers by providing information,
services and support.

Disabled children and their families to receive co-ordinated,
high-quality child- and family-centred services.

Introducing a child Health Promotion programme, strengthening
early intervention by enabling children to receive help at the
first onset of problems.

Children with developmental delay should receive early
intervention to address their needs, provided by a range of health,
education and social care professionals in a range of
settings.

Co-ordinated multi-agency assessments leading to prompt,
convenient, responsive and high quality multi-agency interventions
that maximise children’s ability to reach their full
potential.

Case study

Gillian Upton Holmes’s son Hal was born with cerebral palsy and
severe learning disabilities. When he was six months old a
paediatrician told Gillian “Having a disabled child is hell, you
know.” Three months later Gillian visited a private consultant who
was much more helpful and gave Hal a formal diagnosis of cerebral
palsy.

Gillian experienced excellent early intervention from the
education department. She had a parent partnership officer who took
her round to visit lots of special schools and was very supportive.
Hal started formal education at three years old, which was
invaluable to his development.

Gillian and Hal also benefited from joining a family support
group – Ryedale Special Families. The group was run by parents and
professionals jointly, giving both the chance to share experiences
and knowledge, and allowing them to express their views in a
non-judgemental setting. They combined social events with meetings
to discuss the latest policies for their children.

As a result Gillian developed a better understanding of the
system, and became more adventurous in getting Hal involved
activities with other children. Hal is now a happy relaxed
11-year-old child and Gillian feels they all gained strength from
the family support group, by being with other parents and having
positive attitudes. It also changed stereotyped views of
professionals and the parents themselves of what a disabled child
can achieve.